caring for those with Frontotemporal Dementia (FTD)

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(Un)Happy Anniversary and Interventions

June 1 marks the six-year anniversary of the real start of Lydia’s journey with FTD. She was not diagnosed until a couple of years later, but what started this journey was a car accident she had on this date.

In a 3-months-new car, Lydia got into an accident with a large trash pickup truck. I don’t think the airbag deployed, but she may have had a seizure or the impaired judgment of FTD that caused her to go through an intersection when it was not safe. Luckily, nobody was in the crosswalk and the trash truck was so huge that nothing happened to it. Unfortunately, Lydia’s brand-new car was essentially totaled because every panel of the car was damaged on the passenger side, and I think the frame, too.

What was alarming was that afterwards she could not accurately describe what had happened in the car accident. When I asked her was the trash truck going left in the intersection, she said yes. Then we talked a little more, and the story changed. I could not get a clear sense of whether she was going straight, the trash truck was going straight, the light was green, the light was red, the light was yellow, the truck was going straight, she was going left. Who knew? It was alarming to me and our mom, and we thought she shouldn’t be driving anymore. Thankfully, no one was killed or maimed.

She had an appointment with a neurologist a couple of weeks later. This neurologist was a new doctor to us. Our whole family went with Lydia to the doctor, who thought it would be better for us to tell the DMV that Lydia was giving up her license voluntarily, because if she was able to get better, it would be easier for Lydia to get her license back than if the DMV took away the license.

The people with Primary Progressive Aphasia tend to live the longest with the disease. Plus, FTD was less known at the time. It took about two years to get the diagnosis, after numerous visits to rule out B12 deficiency, spinal tap, thyroid, mercury and lead poisoning, hormone imbalance, etc. Too bad more of that couldn’t have been at the same time, but Lydia was sans “health insurance” at the time of this horror show, thanks to the global bank implosion. From time to time, she still mutters “stupidest bank,” which is still getting into trouble with the regulators, even this year. Even though she didn’t work on the banking side, rather on the Wealth Management/Trust/Private Client blah blah blah side. They still try to do things to look like they are good corporate citizens, but they have ruined an over-100-year-old reputation with their criminal greed.

The other thing I learned recently after my last post was that there is something called a “fidget quilt” for dementia patients. So mom and I went to the fabric store and picked out things with meaning to Lydia and bright colors like her sensory toys and texture. I had been told that things with texture and color helped with making new brain connections when Lydia was in her second rehab center, but due to something stupid that happened with her stuffed animal, she was transferred to the hospital, and they didn’t accept her back. Then she went to the really bad hospital because the first one didn’t have any available beds. There, she got a horrible black eye that looked like she had been punched in the eye by a boxer. Then that doctor gave her 15 times the dose of the medication of what she should have been on because he ignored all her medical records, us and the actual diagnosis by a specialist in FTD. She then had to be detoxed from that in yet another hospital. That guy had a lot of negative reviews online…I can’t imagine why.

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Thank you, generous donors!

Our Inaugural FTD Awareness Dinner–Food for Thought: Hollywood Beach, raised over $7,000 for the Association for Frontotemporal Degeneration! In my first event, we raised the 3rd most donations for the AFTD of all the fundraisers. I’m trying to double that in 2018. Margy Gates’ painting sold for $2,000 and 65 people bought tickets to the dinner and participated in the silent auction. More generous donations came through online by people who couldn’t attend. Thanks to Kelly’s Lot and The Waterside Restaurant and all the generous donors. Thank you all for making this event a success!

Donations to Fight FTD

Together, we can #EndFTD!
https://www.classy.org/fundraiser/1596068

Your donation to AFTD's Food For Thought Campaign will help fuel AFTD's mission: to improve the quality of life of people affected by FTD and drive research to a cure.